Oncologist appointment tomorrow - what questions should I ask?

After being diagnosed on 18th January and going through all the various test, I finally get to see the oncologist tomorrow. Would like to hear from anyone who has any suggestions about what questions would be good to ask. 

Also what are your experiences of how long it took for treatment to start after first oncology appointment. As my breast cancer is grade 3 and fast growing, I'm worried about it spreading, before my treatment even gets started. 

Was it suggested you have a PICC line or port?

  • Woohoooooo!!  Well done Pippin.  Hope you rang that bell loud and hard!

  • Hi Greeny80

    I have my planning appointment on the 12th and they think it will be at least 3 weeks before radiotherapy actually starts.  I will be having 9 rounds, so not too onerous.  How about you?  Apparently the standard used to be 25!! 

    Like you, iIm feeling pretty ok about the radiotherapy itself.  I'm more concerned about the daily slog to the hospital!  I've requested afternoon appointments so I can work in the mornings and then just chill when I get home after treatment.  Have you been practising the breathing technique/breath holding we need to do?  

    Good luck with the Zoladex/ovarian suppression injection.  Thankfully as mine was non-hormonal I don't have to do those - just the ibandronic acid tablets to protect my bones.

    It was lovely to see dad and yes, very emotional after 2 years!  He's doing quite well for 92, but he does repeat himself a lot  and the telly was on a million decibels lol.  The drive tired me out a fair bit so am glad I did an overnight stop on the way down.  I did manage to get home in one go, even if it was a little slower than normal.  I'm just glad I was able to do it. 

    Good luck for the 18th.  Let me know how it goes :) 

    xx

  • I most certainly did ring that bell and it felt so good. I actually can't  believe the chemo is now over, feels strange really. Went for an ultrasound scan today and it was all good news. They said the tumours are now quite vague, which is apparently a good sign. The tissue area that showed cancer cells when I had the mri, can no longer be seen. Also, underarm lymph node area has shown a big improvement, I came away feeling really good. Good luck with your appointment  on the 12th, let us know how it goes. Great that you will only need 9 rounds of radiotherapy, you must be pleased about that. So pleased that your trip to see your dad went well, it must have been lovely to see him. Xx

  • Hi Greeny,

    I am delighted to hear that you are feeling better today. I hope that you enjoy the Isle of Wight. The break should pick you up before you start on the next stage.

    The scald was quite an unexpected experience. Over a month ago, I spilt the coffee over my tummy, whilst attending hospital. It was sore, but bearable. Just  2 days later it came up in huge blisters, which started to burst. The nurses have been dressing it regularly ever since and it is at last beginning to look better. Unfortunately, the coffee spilt over a large scar, which I have from breast to groin. This took nearly 3 years to heal completely after surgery, so I was concerned that I might have problems with healing again.

    Here's hoping that the weather improves for your break.

    Kind regards,

    Jolamine xx

  • Hi Pippin,

    I'm delighted to hear that you got to ring that bell at last. I've just read your other post and am delighted to hear that your ultrasound showed such favourable news too. No doubt, your hubby will soon be an expert at your injections! 

    Kind regards,

    Jolamine xx

  • Hi Jolamine,  I'm feeling good about everything at the moment. Have a few more appointments this month, hoping by the end if the month, I will have plan in place for surgery. I'm must say I'm getting little anxious about the surgery now. Not so much the surgery itself, more so the recovery process.I have been quite active during chemo, but feel the time after surgery will be more restrictive. I hope your healing continues to improve and that you are not in too much pain. Xx

  • Hi Pippin

    What type of surgery are you having? 

    xx

  • At my last appointment which was before chemo started, they mentioned mastectomy with diep flap reconstruction. Think this is due to more than one tumour  I am going to talk to them about doing a double, but I'm not sure they'll be willing to do that. My reasoning is that I've been told that I have dense breasts, so I know that it is harder to detect problems on mammogram. I don't feel that the yearly mammogram will relieve any anxiety. Before this diagnosis  my last mammogram had only been 14 months earlier, which hadn't shown anything. Yet my diagnosis was stage 3, two tumours and another area of concern, as well as lymph node involvement. It does seem a lot to have developed in such a short time. They said they would make the other breast match anyway, so I feel they may as well do both, but will have to wait and see. What surgery did you have? Let me know how your appointment goes tomorrow. Xx

  • Ah bless you.  That's a major op indeed.  I think you have the right to request a double, but they will want to talk to you about the pros and cons.  I'm with you though, if I had a mastectomy, it would make sense to have a double, and double reconstruction, then at a cosmetic level at least things would be even!  It must be tricky to maintain one reconstruction and one "normal".  Imagine as you get older, you'd have one perky boob and one looking at the floor lol (sorry, that's my sick sense of humour that's helped me get through this!). 

    I was fortunate that it was only a lumpectomy for me and because the chemo had completely destroyed the cancer, they took a relatively small margin and 2 lymph nodes so there is very little change in shape or loss of mass.  

    Like you, my tumour didn't appear on my annual mammogram.  I found a small lump by accident while playing with my pup.  I was seeing my GP regularly for another condition and it was very much a "by the way" conversation.  If I hadn't done that and my GP hadn't encouraged me to get it checked out, I'd be in a much worse condition today. 

    I got a letter the other week from the breast clinic discharging me back to my GP and 3 yearly mammograms.  When I told the radiotherapy team yesterday they were very surprised and said that that should not be the case and that I will be having annual checks for the next 5 years.  They phoned me today and asked me to bring the letter along to my appointment tomorrow.  Now to find it ... !! 

    I'll certainly keep you posted re tomorrow.  I need to buy some cami tops so I can just slip my arms out and roll the top down for each radiotherapy appointment!  Luckily I have accidently given myself £20 credit on my credit card when I did a balance transfer yesterday.  Doh! Chemo brain is real, though I'm not sure how much longer I can use that excuse! 

    Good luck with the surgical appointment.  I hope they listen to your wishes. 

    xx

  • You did make me laugh Carol, about the one perky boob and the other looking at the floor. Although they did reassure that they'd make the other side match, also told me that boobs would be a bit smaller, but I don't mind that. One bonus is that I also get a tummy tuck, so will finally get rid of a flabby belly. Great that your chemo worked so well, so you didn't need such invasive surgery, I am a bit nervous about it. Definitely check out the mammograms going forward, I was told annually for 5 years. I know what you mean about the chemo brain. I sometimes go into a room for something, then when I get there can't remember what I went in for lol! Good idea about the camp tops, will have yo remember that, when I get to the radiotherapy stage. Hope you have a lovely day. Xx